Thursday, August 2, 2012



When I found out I was pregnant I knew I wanted to breastfeed. The thought of feeding my child any other way never crossed my mind. I even had conversations with a few friends who were also pregnant at the time. They had mentioned their desire to breastfeed as well but also their fear that it just wouldn't work out. That thought never crossed my mind.

While this is a story about my success with breastfeeding a preemie I need to start with sharing a bit of Isaac's birth story with you. My pregnancy was going great. Until the last trimester. Enter high blood pressure, pre-eclampisa and bed rest. Add in a baby that quit growing and you have a 3 pound 4.5 ounce baby born at 35 weeks.

I had a few strikes against me right from the start. First of all, I had to have a c-section. I had no labor at all. The combination of having Isaac early and the c-section confused my body. I mean I was still suppose to be pregnant after all. My body didn't know right away that I had had a baby.

Before Isaac was born they told me if things looked okay we'd be able to try and breastfeed and do skin to skin within the first hour after he was born. Unfortunately he was having problems breathing in his own. So there was no way we could try breastfeeding or do skin to skin. Enter strike two.

Strike three is probably the hardest of them all. Isaac needed a NICU. The hospital we were at didn't have one. So he had to be airlifted to a NICU 1.5 hours away.  I didn't see him for three days.

I started pumping within an hour of Isaac's birth. I continued to pump every 2 hours during the day and every 3-4 hour at night. For the first two days it was all about signaling the body that it was time to produce milk. I didn't get anything from pumping except a few drops every once it awhile. It was very discouraging. At one point I got about half an ounce and I wanted to jump for joy. By the time I was released from the hospital I was probably producing less than an ounce a day. Whatever I managed to get with pumping I would save for Isaac. Pumping was extremely hard to do simply because there was no emotional connection. I was able to hold Isaac once before he was airlifted. Not being able to see my child made things extremely hard. Looking at pictures helped. But it was still hard.

When Isaac and I were reunited it was still to soon for him to try nursing. He was still really little and slept a majority of the time. So I continued to pump. The NICU had a room with a pump so I was able to stay at the hospital as much as possible. We tried to do skin to skin when we could and finally when Isaac was a week old I met with the lactation consultant, LC, for the first time. She helped me with getting him latched and told me what cues and signals that I needed to look for ensure he was sucking and swallowing. I was watching for raised eyebrows and ear wiggles. That's how I knew Isaac was swallowing.

Once we started nursing I wanted to do it all the time but I couldn't. Isaac was still really little and still slept a ton. Nursing was something that really pooped him out. He rarely ever cued that he was hungry so it really was all about going through the motions. Once Isaac was nursing successful with one feeding we increased it to two. We continued to increase the feedings when he did well. It didn't always go well though and it was emotionally draining on those days. Somedays he'd show no interest in nursing at all. Sometimes he'd get latched on but wouldn't do anything but sit there and he wouldn't eat. When he did nurse he's eat for a few minutes and then fall asleep. We kept working at it though and I met with the LC many times. I continued to pump the same amount I was before. Every 2 hours during the day and every 3-4 hours at night. When Isaac nursed I'd pump afterwards. 

I'll be honest. Nursing in the NICU kinda sucks. We were put on schedules of when I had to try nursing. Typically they were always on the hour but they wanted me there 30 minutes before just in case Isaac was wanting to eat before. If they wanted me to try nursing at 8am they wanted me there at 7:30 just in case. He had to be awake to eat and sometimes he'd be sleepy. Sometimes he wouldn't wake up, even when we tried to wake him. After every time he was awake and nursed they'd ask me how it went. They'd ask me if I thought he ate enough and if I thought he needed more. I was a first time mom. I had no idea. There was so much pressure. Most of the time they'd give Isaac more milk through a feeding tube. When we were first trying to teach him to nurse they usually give him a few tube feeds in between our nursing sessions. I really just wanted to feed him on demand. I wanted to feed him when he was showing signs of hunger, but it can't be done that way. Not when you have a tiny baby on your hands.

Isaac was released when we were able to successfully nurse a full day. They took his feeding tube out and we (my husband and I) roomed in with Isaac. He was released the next day. Isaac and I continued struggle at home with latching on and the length of nursing but we weren't bound by schedules so it made things a lot easier. When Isaac came home the LC told me to keep up with the pumping after every feeding and then drop a pumping session every few days. I am not sure why they wanted me to do this but as a first time mom I listened. It created an oversupply issue which made nursing even more challenging. I was almost always engorged which would often cause milk to get everywhere whenever Isaac would try to nurse. I did some research and spoke with the LC who told me to stop pumping and then try block feeding. I had to nurse from one side for several hours while leaving the other side alone. Then after 2-3 feedings I nursed from the other side. It was an extremely painful process. But it was corrected after a few days.  

Isaac is almost five months old and we still need to use the cross cradle hold because he still needs my support with his head. Sometimes we are able to do the cradle hold but not very often.  A majority of the time he is able to get latched on right away with no issues but it took a long time for us to get to that point. His nursing sessions are never very long. Usually only 10-15 minutes. Sometimes a little longer. And he rarely nurses from both sides. At first I was concerned, especially in the NICU because all the classes and books say 15-20 minutes on one side and 10-15 on the other side. But he was always getting enough. I guess the books and classes are wrong sometimes. It was a long process and there were so many times I wanted throw in the towel. It was really hard but I just couldn't allow myself to do that. Now I look back at everything we went through and I am so proud that we managed to beat every obstacle that came before us. 

Don't give up! Just keep working at it! You won't regret it! 
Wednesday, August 1, 2012
If you don’t know your A’s and B’s allow me to briefly explain.

A is for apnea, a temporary cessation of breathing.

B is for bradycardia, when the heart rate slows to 80 or less beats per minute.

Most babies in NICU will experience both of these at some point. They can be very frightening, but luckily most babies grow out of them quickly. A/B’s can become a hurdle for preemies leaving NICU because they’ll need to be episode-free for several days before discharge.

In some circumstances you’ll be given an apnea monitor to take home with you. They’re very loud (and sensitive!) so you’ll know by the lights and beeps what your child is experiencing.

Leaving NICU with a monitor.
While in NICU practice not watching the monitors – focus on your child! It’s harder than it sounds because when you hear the alarm you want to see what is happening. Leave the monitors for the nurses and instead focus on your child. You’ll need to see how they are doing and if stimulation is needed. Give your baby a chance to do it themselves as hard as it is to not step in immediately.

Like all preemie things they will grow out of A/B’s. For some it might be a matter of days but for others it might take a few months.

Your baby will be monitored by a team of apnea doctors who will analyze the information recorded on your monitor. At first your baby will probably have to be attached 24/7 but once their stats improve you’ll only have to keep them on it at night. Do not brush off your doctor’s instructions! It will only delay getting them off the monitor.

If your baby is turning colors, having a significant amount of A/B’s per day, and/or requiring stimulation on many occasions please contact your doctor immediately and/or go to the ER.
Monday, July 30, 2012


Picture from
A Patent Ductus Arteriosus or other wise known as a PDA is a blood vessel that is present in all babies while still in the womb that does not close within the first few hours of life.  Ductus arteriosus is a blood vessel that is open while the baby is in the womb, that allows blood to bypass the lungs and allows blood to flow from the pulmonary artery to the aorta.  When the baby is born, and the umbilical cord is cut, the baby takes a few large breaths, which cause the lungs to supply the oxygen.  The lungs expand, the blood vessels relax and receive more blood flow and the ductus arteriosus usually closes on its own.  When the ductus arteriosus does not close on its own it is known as Patent (meaning open) Ductus Arteriosus or PDA.  When the PDA does not close it allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery.  This can strain both the heart and the lungs.  


On average PDA is a fairly common congenital heart defect that is diagnosed in the United States.  Although the condition can happen in full term babies, its more common in premature infants.  It is also twice as common in girls as it is in boys.

   Here are some signs that a baby may have a PDA: 
  • Fast Breathing
  • Working Hard to breathe
  • Shortness of breathe
  • Premature babies may need to be put on a ventilator, CPAP machine or nasal cannula due to a PDA
  • Poor feeding
  • Poor weight gain
  • Tiring and wearing out easily

How a PDA can be diagnosed: 

Typically a Doctor or nurse can hear a heart murmur that is the result of a baby's PDA.  A heart murmur is an extra or unusual sound heard with the heartbeat.  There can be several reasons and many causes for a baby or child to have a heart murmur that does not mean they have a PDA. 

After a Doctor or nurse suspects a PDA they will then order a Echocardiography (heart echo) or an Electrocardiogram (EKG) to take a look at the baby's heart.   The Echo is an ultra sound that can detect the size of the PDA and how the heart is responding to it.  The Echo can also tell how the treatment is working.  During an EKG the will place electrodes on the baby's chest (arms or legs) to measure heart activity.  The EKG traces the activity of the heart onto paper for the doctor to see the rhythm, speed of the heart beat and whether the heart is enlarged.

Treatment for a PDA:

For a full term newborn with a PDA that is showing no signs or symptoms the Doctors will usually try and give it time to close on its own and monitor the PDA with doctor visits.    However if a PDA is still present after the newborn stage, it generally will never close on its own.

For a premature baby a PDA can go two different routes, it can either be causing one or several of the symptoms we talked about earlier which would mean the baby would need surgery to close the PDA immediately.  If the baby is showing minimal to no regression signs from the PDA then the doctors will take a wait and watch approach, where they will monitor the baby's symptoms and PDA very closely while still in the NICU.   A PDA if given time, will usually close on its own in a premature baby but there are some instances where a baby will be discharged from the NICU with a PDA and have to follow up with their pediatrician as well as a pediatric cardiologist to monitor the PDA.  In most cases if it does not close between 6 and 12 months then they will either do surgery or a procedure to close it. 

The reason why they can not let a PDA go, usually past the age of 1, without it closing is because it puts a child at large risks for contracting an infection called infective endocarditis (IE) which is an infection of the inner lining of the heart chambers and valves.

3 ways to close a PDA:

  • Sometimes, although it is happening less and less a doctor will treat the PDA with medicine in hopes that it will close sooner without surgery.  Doctors will often use Ibuprofen or Indomethacin to treat premature babies to help close the PDA.  However those medicines are showing to have many side effects that can effect the kidneys, so Doctor's have started to use this approach less and less.  Also these medicines have to be administered within the first 7 days of life for them to be effective.
  • If a premature baby is having distress with their lungs or heart due to the PDA then a doctor will have to perform a PDA ligation surgery.  During a Ligation surgery the baby is put completely under and intubated.  During the surgery a small incision between the ribs and the ductus arteriosus is tied and cut.  This surgery can be preformed at any age. 
  • Lastly is the Cardiac Catheterization Procedure.  If a full term newborn makes it to 6 to 12 months with its PDA then usually a doctor will opt to perform a Cardiac cathererzation procedure.  The baby or child is sedated and catheters are placed into the blood vessels in the groin and fed up to the heart where they take pictures of the ductus arteriosus with dye.  They will then use either a coil or flexible device within the ductus to "plug" it. 

My daughter Nora was born at 25weeks 5 days and she was diagnosed at 1 week old with a PDA. We were lucky due to the fact that Nora has had minimal complications so far with her PDA.  There were a few times in the NICU when Nora had to go up on her oxygen because they thought that her PDA was causing her heart to shunt ( oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery).   Nora also had a hard time coming off her oxygen, but she was finally oxygen free 2 days before discharge!  However she still needed the oxygen for feeds so we were sent home with oxygen.  Doctors said this was most likely because of her Chronic lung disease but also because of her PDA still being open.

When Nora was first diagnosed with her PDA it was considered small and minimal and when she contracted an infection a few weeks later, her PDA went from small to large.  The Doctors have kept a close eye on it, but she was discharged from the NICU at 39weeks 3 days and her PDA had not closed.  It is now considered small-moderate in size.  Nora also has high blood pressure, which her Pediatrician wants to make sure is not being caused by her PDA so we have been referred to a Cardiologist.  Nora is now almost 6 months actual and 2.5months adjusted and we will be seeing a Pediatric Cardiologist in two weeks, 6 days after her 6month birthday.    Judging from everything I have read and heard it sounds like Nora's PDA is past the point where it will most likely close on its own.  Her Cardiologist could still give it a bit more time, but we will have to wait and see what he decides.  I am still not sure because of her being a preemie and still being so little, whether she will have the ligation surgery or she will have the catheterization procedure.  Although a PDA can be very serious, it is also very common in premature babies and usually has no long term effects if treated appropriately.

To read more about Nora's story or to follow her PDA outcome you can go to my blog at:


In researching for this post I have used the following articles:


Friday, July 27, 2012
 
About halfway through our NICU stay both twins were diagnosed with reflux. Blake’s was solved mostly by keeping him up right after feedings, and pacing him. The closer we got to their due date the better things got for Blake. This was not the case for Addison.
 
They first tried her on medicine, Prevacid, but that didn’t work. Next they tried adjusting her feedings so that they would run slower over a period of a few hours. That didn’t work, so they tried pushing her feeding tube down further, past her sphincter muscle and in to her intestine, bypassing the stomach all together and in hopes of stopping the refluxing. She was still having Brady spells and refluxing but not as bad or as frequent. Her case was so severe that they did not even want to attempt oral feedings.
 
At this point it was decided that she would be transferred to another NICU where there was a GI doctor on staff and would have her evaluated for a G-tube and Nissin Fundoplication. The Nissin Fundoplication is surgical procedure to treat reflux. During the procedure the surgeon would wrap the top part of the stomach around the bottom of they esophagus and stitch it into place, which reinforces the closing function of the sphincter muscle, thus preventing reflux.
 
We were very hesitant to put our baby under the knife for any reason, and while we waited for her transfer I started researching the procedure and looking for other’s experiences. There were a lot of mixed reviews about the procedure which only left me more confused, nervous and undecided.
 
When Addison was finally transferred to the new hospital, we had to wait a few days to meet with the surgeon and come up with a plan. First thing he wanted to try was moving her feeding tube back to her stomach and see how she responded, it was clear she still wasn’t tolerating it, even though she was still on reflux medicine. He also wanted to run a pH Probe to just how much reflux she was having and how often, but to do that they would have to stop her medicines and risk an increase in the reflux and potential aspiration. The surgeon was very hesitant to do the pH Probe due to the overwhelming volume she was already refluxing with meds, and cautioned us and we were left to make the decision. Seeing her in pain and choking on formula over and over and needing to be suctioned several times a day… we knew our only option was the surgery.
 
On 6/13/11, Addison underwent surgery and they were able to successfully perform the Nissin Fundo and place her G-tube. To be honest things were very rough for a few weeks after surgery, and again we questioned why we did this to our little girl. The surgery itself was successful but afterwards she stayed intubated for almost two weeks and ended up with yet another staff infection, these were things we were prepared for but not expecting. The Neo who sent her to surgery reminded us of where she started (she had always been sick from a respitory stand point) and told us point blank to expect a decent intubated period post op. The reflux certainly didn’t help her already fragile airway.
 
After those first two weeks post op, things did get MUCH better. I spent my days learning how to care for her G-tube and how to feed her. All while managing her twin brother who was already home and waiting for his sister to join us. When she came home things went well, but I must admit, I had a very strong love/hate relationship with her G-tube initially (and some days still do). But as the weeks went on and she got bigger and stronger and healthy I knew we made the right call for her. We did experience retching (where she would gag a little but couldn’t bring whatever was causing it aka reflux, up), but that too got better over time and we learned some things triggered it.
 
She is now almost 18 months old and is still primarily G-tube fed, but otherwise doing well. She is no longer in pain from her reflux and developmental is not too far behind. Had we not done the surgery it’s hard to say how much longer they would have kept her in the hospital waiting for her to out grow the reflux. 

Tuesday, July 24, 2012
For Part 1 of this series, click here

HOW IS GER DIAGNOSED?

If your infant or child has any of the above symptoms and you are concerned that she may have reflux, talk with your pediatrician about having her evaluated. GER may be diagnosed by a single office visit, or a referral may be needed to a pediatric gastroenterologist for further evaluation. Your doctor or specialist will review your child's symptoms, determine if her weight gain is appropriate, and possibly order special tests. These tests may include an upper gastro-intestinal X-ray (UGI), a milk scan, a 24-hour pH probe, or an endoscopy.
My son was sent back to the NICU (ugh!) and it was there that they started to run some tests on him. He was seen by the Speech Therapist/ Feeding Specialist to see if it was his suck, swallow, and breathe. It wasn’t. I told them that he was obviously uncomfortable and I was convinced it was reflux. They don’t like to put babies on reflux meds but I really pushed them to figure out what was going on. He went in for an Upper GI (UGI) and they found that within a mili-second of him swallowing, the food came back up and down over 7 times. Thankfully, he wasn’t aspirating (where the liquid food comes back up and goes into the lungs). So it was then we got our diagnosis of “severe reflux”.

TREATMENT:
Treatment of GER varies from simply thickening formula, to medication, to surgery. Your doctor may begin with thickening the formula and suggesting that your baby be in an upright position most of the day, especially after eating. Try to hold your baby without putting pressure on her abdomen. Burp your baby frequently (every 1/2 to 1 ounce) and encourage her to suck on a pacifier between feedings. This helps to keep the esophagus in motion, pushing anything in the esophagus back into the stomach.
If an infant is in pain, has slowed or stopped eating, or has apnea or bradycardia that is caused from reflux, more aggressive management needs to be done. Medications such as Zantac or Tagamet or Prilosec that decrease or block the production of acid, and/or medications such as Propulsid or Reglan that improve digestion, may be prescribed. These medications are often used in combination with one another.
Most children will out grow GER by one year of age. As children grow, their esophagus becomes longer and the stomach naturally begins to wrap around the muscle at the top of the stomach.
My son had been put on Allimentum formula prior to his initial discharge because of suspected Milk Protein Intolerance. This seemed to help his reflux as well because often times reflux and MPI go hand in hand. I stopped pumping, which for preemie moms and preemie moms with reflux babies can be an extremely difficult decision. He was also already on a low dose of Zantac. With the new diagnosis, we were to thicken his formula with 1tsp of rice or oat cereal (alternating) per ounce of formula. He was also put on Prilosec and Maalox (as needed). He was to be kept upright most of the day. We got a GI specialist on our team and we checked in with him monthly and adjusted his medications as he gained weight. He was very important because a GI specialist will dose your baby at the highest dose as opposed to a Pediatrician who tends to be more reserved.
I wish I could say that it fixed everything immediately. It didn’t. We played with his medications and the thickened feeds to find the right balance. He lived in a Moby Wrap or his Fisher Price Rock n Play (please get one if your child has reflux, you will thank me!) or his swing or his car seat! It took months for the pain to stop when he ate but I can say that by the time he turned 1 adjusted, he was off of all of his medications and we hadn’t been thickening his food for months. My son’s reflux was one of the most difficult things that I have ever endured and it wasn’t even me with the pai
ADDITIONAL INFO:
I mentioned that babies spit up. They do spit up and if you have a happy spitter then there isn’t a real reason to put them on medication for reflux. I would still talk to the pediatrician about it to let them know what is going on and to check weight gain. The medication does not STOP the reflux, it only makes it more comfortable for them.
The other thing I wanted to call attention to is something called silent reflux. It can be scary to not know that your child is refluxing. It is harder to detect because they aren’t spitting up. But here are the symptoms for silent reflux:
•         poor weight gain or rapid weight gain
•         gulping with a painful look on the face
•         sour breath, wet sounding burps
•         persistent or chronic cough
•         frequent hiccups
•         sudden burst of painful crying
•         painful wakeups from sleep or poor sleeping habits
•         poor feeding habits, possible feeding aversions
•         neck or back arching during or after feeding
•         excessive fussiness, crying or colic
•         demands to be carried constantly
•         red or salmon colored throat
•         blood in the stool or spit up

These last two signs are possible indicators of Barett's Esophagus. The risk of Barett's Esophagus is slightly higher with silent reflux because there is generally more damage to the throat with silent reflux in infants, although it is still a fairly low risk.
HELP:
Having a child with reflux can trigger many emotions. It is normal to feel anger, frustration, and sadness. Sometimes it helps to talk with those who can empathize with you and understand your feelings and concerns, such as other parents of children with reflux. You'll need support to make it through these difficult days. A national parent support group called PAGER (Pediatric Adolescent Gastroesophageal Reflux Association, Inc.) can help you find any further assistance you might need. Their website address is http://www.reflux.org or they are located at PO Box 1153, Germantown, MD 20875-1153, (301)601-9541. 
OR
E-mail one of the Resource Blog creators and they can get you in touch with me!


Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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